Today I took a shower and actually enjoyed it. I stood there letting the water run through my short hair and down my bald spots on my scalp and focused on the clear water running down my back void of any contaminants. The empty parts didn’t bother me so much for the first time because for the first time in four months I was no longer losing. You see, for the last four months my hair has been falling out. We’re not talking hair thinning with age falling out we are talking clumps of hair in hair brushes and clogged drains falling out. I remember the first time when I realized what was happening was not normal. I had spent the night at my girlfriends apartment, took a shower and as I washed my hair I could see the hair falling. I would run my fingers though my hair with the conditioner and pull out handfulls of hair. By the time the shower was done I yelled down the hallway wrapped in a towel still dripping just staring at a tub full of hair feeling horrified. That’s when I knew I needed help.What would transpire would be a trip to the dermatologist who would run a multitude of tests which would render no real answers. “Normal” was the answer in every result. Upon entering his office the second time I sat there just looking at him as if he would have the magic pill that would make it stop. He looked at me almost knowing what was about to happen. He asked if I was under stress at which I just looked at him and said “Well, Covid, quarantine, kids out of school, a special needs child who is receiving no help, on lay off from work…” he stopped me he said, “stress”. Diagnosis Stress. I sat there as he looked at me with a gentleness in his eyes that I had needed so badly and just began to cry. I remember looking down as I tried to compose myself and seeing hair lying lifeless on my black yoga pants as if my lap was the safest place for it to land. The medical assistant stood there quiet, holding my chart frozen not sure of what to do. “I am going to offer you the worst advice ever” he said “you need to just chill out”. He looked at me with a half grin and we both laughed knowing the absurdity of that statement. He would at that point prescribed me a lotion that I would apply on all my bald and thinning spots and I would return two weeks later.That two weeks was the longest two weeks of my life. As I counted down the days to my next appointment The hair continued to fall and I began to skip more and more time between hair washes because the feeling of clumps of hair running down my legs was as bad as seaweed touching your leg when you know its coming and there is no way to avoid it. Whenever I did wash my hair I would stand there sobbing as I pulled more and more out of my head with no end in sight. It was apparent that this lotion was not working. I would get dressed and come down stairs and my mom would always ask me “how did it go” as I would just look at her and reply “it just keeps coming out”. It was in this two weeks of waiting that she would come into the bathroom as I was brushing my hair and I would say “I don’t even want to touch it”. “Here, give me the brush” she said. I’ll never forget the look on her face as she pulled the brush from just one stroke of my hair and looked at what she was holding in her hands “oh, my God!” she said in horror as she set the brush down. She just looked at me horrified. “I had no clue it was so bad!”It would be in this time that I would have my first time even considering a wig. I was almost fully bald on both sides and the back was sketchy at best. I walked into that wig shop noting immediately the perfect cut of hair wrapped in a hair tie sitting in a basket just waiting to be made into a wig for someone like me. The hairdresser keen in wigs knew ahead of time that I had previously adorned black hair because my friend had told her. I was to shy to call prior to the appointment. I had no clue what to say. so we walked into the small private room and i took off my hat and looked in the big mirror before me. She picked up a long wig and placed it on my head and I just stared in silence for a moment before I began to sob. “It looks just like my hair” I said, unable to say anything else as i looked back at my friend and noticed the tears beginning in her eyes. “Let me try the blonde wig” I said jokingly “I’ve always wondered If i could pull off the barbie look”. She placed it on my head and we all began to laugh. It was then that I knew the “barbie look” would never work for me.Appointment three is when I think the Doctor really became concerned. It was apparent now that I would not be able to go into public without a wig or some sort of head covering. It was also apparent that this lotion for my scalp was not enough. He had me sit in a chair as we spoke about something random, I don’t remember what, he said “lean forward, like this, put your face in your hands”. I didn’t question him, I knew he was the best, he had helped my brother with severe eczema and had helped my mom with skin cancer. That’s when I felt the first small pinch of a needle. He kept talking as he kept the needle moving. Pinch after pinch until, I was later told, I had been given over 25 shots of steroid in my scalp. He left the room and the medical assistant started pulling another shot with a longer needle and said “this is going to go into your hip”. I looked at her. She looked at me and smiled. It was the same medical assistant from the last two visits, she had been in on this journey with me from the very moment I walked into the office who was I to say anything. We made small chit chat as I pulled the waste band of my pants down and she cleaned the area with an alcohol pad in preparation for another more potent injection of steroid. For a moment its as if the world paused and I flashed back to the days when we would inject patients in the same manner with antipsychotics when they lost control. It was ironically metaphorical really, they lost control and I was losing hair. Poke and done. I was sent on my way with a bleeding head, a sore toosh, a prescription for a medicated steroid shampoo, another appointment in three weeks and hope.After about a week of using the shampoo daily, which required me to lather it on my dry scalp, leave it on for fifteen minutes then rinse it out, I began to notice less and less hair in the drain. At first, I chalked it up to having less hair, and would tell myself not to get too excited because percentage wise was I really losing less? During the day, I was training myself with my new wig and slowly getting used to caring for it and having something foreign on my head. Sometimes, I would get brave and I would sit on the porch but the moment I saw anyone pass by I would bolt into the house to hide. I didn’t want anyone to see. I felt like I looked sick despite a clean bill of health. I continued the shampoo and would have my mom look at my bald scalp almost daily in hopes that something miraculous was happening. Everyday went like this, Medical shampoo with no fragrance, intense looks with a magnifying glass, lots of prayers that sometimes, I’ll admit, were more pleading in nature than prayerful, wigs, hats and tears. I began to look at women with long hair longingly as if they were some greater creature than I. My self confidence was waning.But, Slowly, I began to notice less and less hair in the drain and on my hands. Then, I saw what I call “baby hairs” popping up in various places and I couldn’t help but begin to get excited. I continued on. Today, appointment four, I had a different medical assistant which made me feel vulnerable in some way. She was nice enough though she called me Kristen a few times which I didn’t feel a need correct her. The other medical assistant popped her head in and said “HEY! I saw your name and I had to come see you! How are you?!” “Well, I’m still mostly bald on the sides but i have a lot coming back on top!” I said smiling as she was pulled away by other patients and responsibilities. Today, I got seventy four shots in my head and another in my other hip. As the doctor exited the room I was still sitting in the chair with my head resting in my hands posed as I was the first time I had received this treatment and I felt his hand rub my back softly yet encouragingly. He never said goodbye, he didn’t need to.Tonight I took a shower, I cheated and used cheap green apple shampoo and nothing came out. There was no hair in my hands, none ran down my legs and there was none in the drain. I stood there just letting the water run as I breathed in the cheap fragrance so deep. I stood in the mirror and picked up the big round brush my mom had used that first day she realized the extent of my issue and ran it through my hair stroke after stroke and the brush remained clean. I smiled and just kept brushing my cool wet hair that felt so good on all the places the needle had kissed my head. It had been months before I could brush my hair without fear. I tilted my head and leaned in closer to the mirror to inspect where all my hair was beginning to grow back and felt like I was starting to get my life back however slow the process. You know what they say, all the best things in life take time.What a journey this has been, Its been a journey of loss and of finding the vulnerable parts of myself that I never knew existed. I learned a lot about people and the power of friendship. I learned about adapting, change and hope. I learned about perseverance and whats really important in life. I learned a lot about what it means to embark on a personal journey that no one will ever fully understand until they are traveling it. I have another appointment in two weeks and I hope that I will be able to show them some good progress even if it isn’t anymore hair, the progress I have made in my overall outlook on it all has been exponential and what I have gained is far more than what I have lost. I hope that one day I can finish this story but for now all I can say is that in life all we have is hope and love without those things we have no solid base when things fall.
Published by Autism Unrestrained
My name is Sue. I am a mother of three children one listed as Severe on the Autism Spectrum. I carry a bachelors degree in Psychology with a minor in Sociology from Eastern Michigan university and have worked as a Mental Health Technician in the inpatient setting for the last thirteen years and have recently become an ABA technician. I have seen in my years of working in psychiatric that the field of mental health has a great need in explaining the everyday battles of mental illness and in my case Autism spectrum caregiving from the caregivers side. This is why I have chosen to open this blog. It is my ambition to pull away the curtain that so many of us hide behind and really let the world see what everyday life with autism/mental illness is like. View all posts by Autism Unrestrained